This time last week I had just had my first neurology appointment. I’d booked the earliest slot available (three months in advance), had chosen my hospital wisely, and had even researched the listed Doctors to ensure I was giving myself the best shot!
I arrived at 8am, was greeted by two very friendly staff members and then had a short wait followed by a 15 minute appointment with the Neurologist who was super helpful and informative.
I listed my symptoms, gave him a brief run through of my medical history and presented him with my test results. He asked a few questions and tested a few of my reflexes. My tremor was active, which was pretty impressive timing and definitely helped state my case!
He said it was clear something wasn’t right but we shouldn’t just jump straight in and treat Lyme, as although my results are positive for past exposure it’s not enough to indicate a current infection. The thing is, Lyme (aka Borrelia) can bury itself and it can lye dormant so catching it when active isn’t always possible. The best place to look for it is the spinal fluid. So I’d need a lumbar puncture and he said he’d rather rule out everything else first before doing something so invasive. I agreed. I’ve been dealing with health problems for the best part of a decade, I think I can wait a bit longer if it means I’m taking a thorough route to diagnosis and treatment.
So we’re starting with an MRI.
After that, he explained I could be referred for a brain scan where my reactions to certain stimulus would be observed.
After that, assuming no extra spanners in the works, he would refer me to an Infectious Disease Doctor. That’s probably when the lumbar puncture would happen and treatment wise, I would be looking at a minimum of 6 weeks drip-fed antibiotics.
The Neurologist knew more about the situation than I thought he would and seemed pretty clued up on the difficulties of diagnosing and treating Lyme. Having read some awful things about the way Lyme patients are treated and the way Lyme is approached in the UK, I feel like it went really well. It certainly could have been worse!